Two Things I've Never Heard Of..........Shit.

As I sit here eating Fruit Loops this morning (yes I still love cereal), I'm still trying to process everything that I've been told in the last two days.  I feel extremely overwhelmed. In two days time, I had two new diagnosis handed to me.  Two diagnosis that I have NEVER heard of, and nobody I have told has ever heard of them either.  Of course I get the crazy unknown diseases. Of course.  I'm sorry if this sounds bitter, I'm going to be honest, I am a bit bitter today.  I know I'll come to accept it, I know that I'll feel better as I learn more, but right now, it's all too much at once. 

Two diagnosis, in two days.  TWO NEW DIAGNOSIS IN TWO DAMN DAYS! I feel like screaming at the top of my lungs. I feel like crying. I have cried. I haven't screamed yet, but who knows, I probably will at some point.

So, I guess at some point I should come out with what it is.  I think I'm not really wanting to put it into words, but here it goes.

At my post-op I was diagnosed with Adenomyosis.  What is this you ask, well so did I.  I still don't know a lot but here is what I do know: 

Adenomyosis (pronounced A - den - oh - my - oh - sis) is a medical condition characterized by the presence of ectopic glandular tissue found in muscle. The term adenomyosis is derived from the Greek terms adeno- (meaning gland), myo- (meaning muscle), and -osis (meaning condition).
Adenomyosis is a condition where endometrial tissue, i.e., uterine lining cells, are dispersed within the muscle of the uterus. It is essentially "endometriosis" of the uterus. There is no capsule or line of demarcation between adenomyosis and the rest of the uterine muscle, like exists with the more common condition of uterine fibroids, benign muscle tumors of the uterus. Adenomyosis is an intensely painful condition, with incapacitating pain during menstruation, and prolonged menstrual bleeding. This is because normally when menstruation occurs, the uterine lining sheds and blood drains out of the uterus. But with adenomyosis, the uterine lining, or endometrial cells, that are trapped within uterine musculature, bleed but cannot drain out. So the uterus gets bigger and bigger and more and more boggy and enlarged and painful.

Which means, that my surgery, that we hoped would fix all of my female issues, basically did diddly squat other than remove the polyps.  Which yes that's great, but I still bleed every day, it's still uncontrollable at times, I still have pain so bad I can't get out of bed just from cramping.   It's hard to explain what it is, but here are a few pictures to help you see the difference.

There's not a lot of relief for it, there's no "cure" for it other than a hysterectomy.  Which is not something we want to do at this time of course.  We want kids.  This is not an option at this point in time, and at the same time, we are going to give ourselves a time limit because they also say if we do try for a baby at this time, we need to remember that I have a "hostile environment" for a fetus in my uterus, and it's going to make getting pregnant even harder. There is a surgery called the the Osada Procedure, pioneered by a Dr Hisao Osada from Japan, and it was performed by a doctor in St Louis at St Luke's hospital. Unfortunately, after a phone call to Dr Silars office yesterday, I now know that not a single doctor in the United States does this surgery anymore.  The next step for this diagnosis is to start seeing a Reproductive Endocrinologist, that appointment is set for November 6th in Springfield, Il at SIU. In the mean time, I have been taken off of all the hormones to try and control the bleeding, because at this point nothing is helping with the bleeding and won't.  I won't really know more about this at all until after the appointment in November.  All my local Ob/Gyn knows is to either try and get pregnant now, or she can put me on Lupron which would put me directly into Menopause and then no babies at all. So we're waiting until November before I freak out too badly over this.   So this is just one thing. 

Now for the second thing.......

I finally had my Neurologist appointment with Dr Hafez at Blessing Physicians.  There are lesions, and while we can't 100% rule out MS still, he doesn't believe that it is.  He believes that the lesions are caused by my migraines, that it's scarring.  However, looking over my Brain MRI's he has found something else.  It's apparently not found often in adults unless they are looking for something else.  It's mostly found in children and young adults because it's caused and formed primarily when you are still a fetus in the womb.  Trauma in the womb.  So it is:

Chiari Malformation: A Chiari Malformation is a congenital defect in the area in the back of the head where the brain and spinal cord connect.  

Here is info from and the mayo clinic website:

I have Type I so I'll only include info about it, because the other ones might actually scare you. 

Type I – this is the most common type of Chiari malformation. Commonly goes unnoticed until problems arise in the adolescent or adult years of life. In this condition, the base of the skull and the upper spinal area are not formed properly.

What causes Chiari malformation?

Although the exact cause of Chiari malformation is unknown, it is thought that a problem during fetal development may cause the abnormal brain formation. Chiari malformation may be caused by exposure to harmful substances during fetal development or associated with genetic problems or syndromes that may have a tendency to run in families.

What are the symptoms of a Chiari malformation?

The following are the most common symptoms of a Chiari malformation. However, each person may experience symptoms differently. In infants and older children born with this condition, symptoms may include:
stiffness or pain in the neck or back of the head area
decreased strength in the arms
decreased sensation in the arms and legs
rapid, back and forth, eye movement
breathing problems
problems walking
uncoordinated movement
muscle weakness
vision problems
problems with balance and coordination

Treatment for a Chiari malformation:

There are many ways to treat Chiari malformations, but all require surgery. The basic operation is one of uncrowding the area at the base of the cerebellum where it is pushing against the brain stem and spinal cord. This is done by removing a small portion of bone at the base of the skull deep to the neck muscles as well as often removing a part of the back of the first and occasionally additional spinal column segments.

So yeah.  I don't even know what to say about all of this.  If not treated, then yeah it can get worse and worse, it can paralyze or kill you. I guess in the past, when it wasn't found it killed the person. 

I have a whole list of things I can and can't do now, I'm not supposed to do any weight lifting, no lifting anything that would cause me to strain, no bending (really? how the hell do you tie shoes then?!?!?!?!), the only exercising I can do now is like walking, swimming biking etc.  I can do my Yoga still, but nothing where my butt is higher than my head, so no downward dog, no plank, nothing that causes strain etc.  

So, what's the next step......I'm going to be seeing a specialist in Peoria, although I don't know when yet. I'm waiting for a call to tell me when to show up and where basically.  There's too much information out there on this one that is aimed at only Adults because it's usually found in kids.  It's kind of hard to find much info on it involving adults.  I've looked up the surgery for it, and the scar is horrendous. I'm trying not to think too awful much about it until after the appointment with the specialist.  I'll post a few pictures of the before and after of the surgery and then of the scar from said surgery. 

Sooooooooo..................that's all I really have right now.  I'm a little overwhelmed, I'm a little freaked out, but I'm a lot hopeful.  As long as I have loving friends and family I know that I'll get through whatever it is.  As Shawn said yesterday, as long as we have each other we can get through all of this and anything else that is thrown at us.  I don't really want any calls about this, you can text, message, facebook all of that, but please try not to call me about this.  At least not right now.  Thank you everyone in advance.


Shane said…
You're in my prayers, Nicky! Love ya! Stay strong!

Google+ Followers

Popular Posts

Total Pageviews